AIDS UNSAID

Everything you wanted to know about the international response to HIV/AIDS, but were too afraid to ask!

Thursday, August 10, 2006

AIDS blogs at IAC2006

The blogosphere has finally arrived in the AIDS world and the number of blogs being set up in relation to the 2006 International AIDS Conference is mushrooming by the minute - great!

Note: I will update this post and give a short review of each of the blogs I come across, and will also add new blogs to my links list (on the right) for convenience. For what it is worth, the list of blogs below is presented in my personal order of preference/usefulness. If you have an AIDS-related blog that youwould like me to review, please let me know.

What I like about this blog is that all posts (so far anyway) are original text and include personal views and opinions. They clearly have 'higher' goals for the blog too, and say at one point:

"In addition to the extensive coverage of the conference by mainstream media, we think it is important that the perspective of bloggers be heard, and the voice of civil society from around the world – both those who are participating at the conference, and those who are not in Toronto, emerge."

They don't yet make clear whether they are inviting contributors or whether 'civil society' is expected to add their thoughts through the comments function only.

This is shaping up as the activist blog at the Toronto conference. The blog is organised really well and they accept postings from anyone. they describe themselves as follows:

"TimeToDeliver.org will provide highlights from conference sessions and related events, bring reports and materials from direct actions, rallies and community efforts, and talk back to coverage of the conference. We will expose misinformation and hypocrisy, promote open debate, and bring the real voices and images of people with HIV and allies at the conference through multimedia postings"

This site could get extremely busy during the next week or two and the 'Issue Beats' section will be a useful tool to navigate through what could be a lot of content. Some of the early content is focused on shifting the US AIDS policy, but a nothern focus will be difficult to maintain once folks get blogging on this essentially open system.

It's not really clear who is 'behind' this, so I guess everyone is. The site looks good too and will probably long outlive the IAC.

Thursday, June 01, 2006

UNGASS+5: What's missing?

UNGASS+5 Daily Diary - 1 June 2006

Looking at the recent UNGASS+5 country reports and the content of the universal access consultations (and the voluminous report published by UNAIDS yesterday) the epidemic is outpacing what governments, the UN and civil society are doing to slow it down and reduce the impact of HIV and AIDS.

The outcome of the current UNGASS+5 review in New York will in large part provide a framework for re-focusing the AIDS response in the coming five years. In that light, I would like to see the following five things added to the outcome of the meeting this week:

One reason is because the majority of promise and commitments governments made in the original UNGASS Declaration of Commitment (DoC) in 2001 have not been met. The conclusion of the current review must include, first and foremost, a strong reaffirmation of commitment to implement fully the promises embodied by the 2001 Declaration, including taking urgent action to achieve retroactively those 2003 and 2005 targets that have not yet been met.

An unprecedented, inclusive, country-driven process took place in the past six months, as requested by the General Assembly, to identify practical actions for scaling up AIDS prevention, support, care and treatment services. Over 100 national and seven regional consultations, as well as a Global Steering Committee were organised. And yet, incredibly, the resulting operational recommendations, as outlined in the Secretary General’s Report on Scaling-up HIV Prevention, Treatment and Care towards Universal Access, are included only indirectly in the draft Review outcome document currently under negotiation. The Review should at least recognise this effort and conclusion (or throw it out) and make an unambiguous commitment that, by the end of 2006, national AIDS strategies and financing plans reflecting the urgent need to scale up significantly HIV prevention, treatment, care and support towards explicit targets will be completed. In addition, it should state that no credible, costed, evidence-informed, inclusive and sustainable national AIDS plan will go unfunded.

In a repeat run of the 2001 negotiations, it seems some countries are not willing to talk about people who are vulnerable to HIV and AIDS. It is essential that we continue to speak about vulnerable groups. Specific references must be included regarding participation of vulnerable groups in decision-making and implementation of prevention, support, care and treatment strategies – especially those groups not mentioned in the original Declaration. These include men who have sex with men, injecting and other drug users, sex workers, people living in poverty, prisoners, migrant labourers, women, youth and vulnerable children, people in conflict and post-conflict situations, and refugees and internally displaced persons.

In preparing for the current review, independent civil society monitoring of various aspects of the Declaration were organised in 37 countries. A number of governments also consulted with civil society groups in preparing their national progress reports. The current Review should build on this accomplishment to generate a joint commitment by governments, national parliaments, international donors, regional organizations, the United Nations system, civil society, private sector and communities most affected by HIV/AIDS and other stakeholders to work closely together to achieve nationally and globally agreed targets, and to ensure mutual accountability and transparency at all levels through participatory review of AIDS responses.

Finally, UN Member states should commit to ensure the involvement of civil society – including people living with HIV/AIDS – at all levels of national and donor decision-making. This includes: funding allocation decisions; policy-setting; determining programmatic priorities; as well as design, implementation, monitoring and evaluation of programmes.

Monday, May 29, 2006

UNGASS+5: The clock is ticking

UNGASS+5 Daily Diary - 31 May 2006

The UN General Assembly special session to review progress on HIV and AIDS over the past five years (UNGASS+5) gets underway here in New York this morning. For the past couple of days people have been running all over town pulling their hair out. What is on their minds? The current version of the ‘outcomes document’ – the piece of paper summarising the collective views of 190 or so governments, which will be spat out of this UN circus at the end of the week.

If you are already confused how an ‘outcome document’ can be prepared before the meeting has actually happened, welcome to the Alice in Wonderland world of the United Nations. ‘Outcome’ in UN-speak means: What do we (governments) know going into the meeting, and what do we want to say happened during the session?

Even though many participants are being as diplomatic as they can muster, I have yet to meet anyone here who thinks the current version of the outcomes document is acceptable. Why?

To start with, the reasons why we need another UNGASS ‘declaration’ are not clear. A meeting of this magnitude is an obvious a chance to get governments and the UN to give a genuine assessment of how well/badly we have done since the first UNGASS –(that is, after all, what I thought a ‘review’ was) – to re-state their commitment to stopping AIDS as well as previous commitments, and to map out their forward-looking plans for turning the epidemic around. So a document of some kind capturing those elements sounds like a good idea.

Sadly, the current draft outcomes document reads more like a Hollywood re-run of the UNGASS 2001 Declaration of Commitment – a new wish-list. As one delegate stated candidly, “It’s like the first draft was a Christmas tree, and we have all come along and stuck our respective decorations onto it.” The document re-opens a lot of the original declaration content and adds a sprinkling of new issues and themes that have emerged since 2001.

What is needed is an outcome document that reaffirms and builds on the original Declaration and adds the specific issues and priorities that have arisen since then. That would provide a framework to guide the global and national AIDS responses for the next five years.

Given the track record of the past five years, since the UNGASS 2001 AIDS promises were made, the report of this meeting should also include some humility and an expression of regret by people in positions of power and authority for just how badly we have done to address the epidemic.

Another main reason the current document is very weak is that AIDS is obviously now a political issue, and once you enter the political arena, it seems consensus is pretty much impossible on anything. Each government has political points to score this week as well as ‘do’ something about AIDS. So many are trying to move the UNGASS review conclusions closer to their own stance and preferred policies – and not just AIDS policies, but also trade policies; foreign policies; conservative moral policies; human rights and democratic policies – and these are unfortunately more important to some governments than the thousands of people who dies as a result of AIDS or are newly infected with HIV every day. This is the down-side for the past five years of asking for AIDS to be made more political so it carries more weight in international affairs, and gets more extensively funded.

Similarly, many NGOs and other civil society organisations see the UN review as an opportunity to get their priority themes onto the international agenda for the next five years, giving their advocacy and funding arguments the official ‘backing’ of all UN Member States.

So what happens when all these agendas are vying for position? All too often our well-intentioned talk fails us – as they have here already at UNGASS.

Instead of creating something new and realizing the opportunities that are just out of our collective reach, we polarize, entrench and focus on differences of opinion. When the stakes are high, add in a sense of pressure and the international AIDS ‘community’ hardens around positions that we then defend by advocacy within our own stakeholder groups. Governments argue with governments about whether they can use words like condom, for example, and NGOs disagree about whether integrating AIDS with TB is more vital than with sexual and reproductive health services.

We typically walk away without learning about what we might have done differently; what we did to get the result we got, or what to do next time. The sense of fragmentation and separation gets reinforced.

Monday, May 22, 2006

UNGASS+5: Failure to learn will be the harshest judgement of all

The five-year day of reckoning for the most significant political promises and commitments on HIV/AIDS is upon us. At a special session of the UN General Assembly later this week, Member States can either come clean by admitting collective failure to deliver adequate HIV/AIDS programmes in the most affected counties, or they can simply move the goalposts. True to form, the Joint UN Programme on HIV/AIDS (UNAIDS) and its eight UN agency co-sponsors seem to favour the second option and are moving us headfirst towards a new goal of ‘universal access’. One of the potential risks of moving so hastily is that the opportunity for genuine evaluation of the past five years, and the invaluable lessons that must be extracted, will be lost.

According to the five-year AIDS report card published recently by UN Secretary-General Kofi Annan, a 2001 special session of the UN General Assembly on HIV/AIDS (UNGASS) was a “landmark in global efforts to respond to the AIDS crisis.” For the first time in the history of the pandemic, a series of time-bound targets were adopted, and set out in a ‘Declaration of Commitment on HIV/AIDS’, signed up to by leaders from 189 countries.

In the five years since then, Annan asserts, the Declaration of Commitment has “galvanized global action, strengthened advocacy by civil society and helped guide national decision-making.”

Buoyant talk, given just how badly we have actually done over the past five years – or perhaps the past 25 years – to address a global AIDS pandemic that has already claimed 25 million lives.

Later this week, all UN Member States meet in New York for a five-year progress review of the promises they made in that Declaration. Despite some progress in expanding access to HIV prevention and treatment, Annan is expected to dryly advise most governments that they are being outpaced by the epidemic in most places because HIV programmes are still failing to reach the very people and communities most vulnerable to HIV.

According to Annan’s report, for example, a mere 9 per cent of men who have sex with men received any type of HIV prevention service in 2005. Among people who inject drugs, fewer than one in five receives HIV prevention services. A condom was used on average, the report estimates, in only 9 per cent of “risky” sex in the past year.

Less than 10% of pregnant women with HIV have access to the relatively simple drug treatments that prevent mother-to-child transmission: the main reason three million children were born with HIV in the past five years.

Care and support reaches fewer than one-in-ten of the 15 million children orphaned by AIDS and millions more children made vulnerable by the epidemic.

One of the few global targets that was achieved is the amount of money that governments, international agencies and other partners said they would need to tackle AIDS. In 2005, approximately $8.3 billion was spent on AIDS programmes in low- and middle-income countries, reaching the Declaration of Commitment financing target of between $7 billion and $10 billion per year.One inescapable conclusion is that while the money is available, the end results are not. But, rather than insisting on a frank analysis of why we have all failed so terribly to make a difference, the UN agencies tackling HIV/AIDS (UNAIDS and its cosponsors) is claiming: “…the foundation for an extraordinarily stronger and sustained response is largely in place.”

How can such disappointing performance be hailed as a foundation for anything? Exhaustive learning from the past five years would be more appropriate.

Instead, ‘universal access’ – the goal of providing a comprehensive package of HIV/AIDS treatment, care, support and prevention – is now being promoted heavily by the UN. This is a new and untried strategy based on what is – at best – a confusing and ambiguous statement of intent by governments.

The upbeat UNAIDS position has its roots in a single sentence from the Gleneagles G8 meeting last year and the subsequent World Summit declaration:

“We commit to … developing and implementing a package for HIV prevention, treatment and care with the aim of coming as close as possible to the goal of universal access to treatment by 2010 for all who need it….”

According to UNAIDS: “These ambitious commitments have brought the AIDS response to another historic juncture.”

Alongside the other 177 paragraphs of the World Summit document this one sadly does not stand out as particularly striking. Similarly, the G8 is good at making ambitious commitments, and this one is not especially “historic” when placed alongside the endless HIV/AIDS promises they have made – and then promptly broken – over the past five years.

The UN position on universal access is an immense leap of faith, and one that currently trumps the one obvious fact that should actually be bringing the AIDS response to an historic juncture: We are failing to address the epidemic effectively.

Despite popular rhetoric about “knowing what to do about AIDS” we clearly need to learn a lot more before AIDS programmes will reliably provide basic prevention and treatment services to the people who need them.

But even as the ink dried on a late-2005 UN resolution requesting UNAIDS to find out what was preventing ‘universal access’ from being achieved, the agency’s most efficient operation ever was unveiled. Almost overnight, plans were in motion to coordinate over a hundred national consultations, set up seven regional consultations and establish a global steering committee.

UNAIDS has since claimed: “Thousands of people from all walks of life have mobilized to seize this extraordinary opportunity.” The UNAIDS- and UK government-led universal access ‘initiative’ did take a large number of people along with it – unfortunately not in a common understanding, but in a collective misunderstanding. Why? Because the terms ‘access’, ‘utilization’, ‘availability’ and ‘coverage’ are often used interchangeably to stand for the general idea that most people thought they meant when talking about ‘universal access’: That people in need of essential AIDS services and commodities to protect their health are actually going to get them. Many people take the ‘promise’ of universal access literally.

There is also a widespread misconception that ‘universal access’ applies solely to the goal of increasing access to antiretroviral drugs, rather than to the intended one of improving access to a comprehensive range of HIV prevention, care, support and treatment services.

Universal access offers an easy enticement, especially given the disappointing outcome of the recent World Health Organisation (WHO)-led AIDS treatment initiative – 3by5 – that promised to provide antiretroviral (ARV) drugs to three million people with HIV in poor countries by the end of 2005, but only delivered them to less than half of that number.

When the UN system moves with the speed and efficiency that it has shown around universal access, and goes to such lengths to make the process appear inclusive and country-driven, it’s generally a sure sign that a major policy shift is brewing.

Underlying the universal access strategy are recent debates – also largely led by UNAIDS and the UK government – about how donor support for AIDS can be more harmonized and aligned.

A UNAIDS document reveals that:

“Scaling up towards Universal Access is a partnership between the country and its external development partners facilitated by UNAIDS.....It is aimed to better link increased financial support to agreed-on policy and programme goals.”

A significant shift to re-build the AIDS response on individual national AIDS plans risks consigning the past five years of accountability against the UNGASS DoC to a moment in history. Placing universal access centre stage dilutes the most significant and specific political promises on HIV/AIDS overnight.

Adopting individual universal access road-maps would also turn the strategic clock back about ten years to when support for national AIDS programmes was channelled by donors to individual national governments through WHO’s Global Programme on AIDS (GPA). Back then, aid was less tied to international frameworks – with more cash provided directly for government-managed country priorities.

At a recent meeting on AIDS in London, the head of UNAIDS, Dr Peter Piot, commented that he hoped the UNGASS+5 review later this week will not be: “One of those summits where we say: ‘We’ve failed, we’ve failed, and we have no results and we need more money,’ and then we go home.”

Given the Secretary-General’s five-year AIDS report, how could we possibly claim anything other than a collective failure? The current status of the AIDS pandemic – and the appalling track record of providing essential HIV-related services to the people and communities who need them – demands that the UNGASS+5 review meeting be truthful and authentic by going further than even Dr Piot fears, by concluding: “We’ve failed, we’ve failed, and we need to candidly ask why, before we set ourselves new targets or frameworks on AIDS.”Each and every UN Member State has an unmistakable choice before it at the UN General Assembly later this week: Either strongly reaffirm the UNGASS DoC of 2001 and ask candidly why we are addressing AIDS so slowly; or move on with platitudes and blind faith that we are succeeding against the worst pandemic in history.

The first option calls for political nerve and pragmatism in order to learn fully from our failures. The second requires a disregard for the lessons and warnings of the past five years, and for the needs of the 40 million people living with HIV.

Monday, March 27, 2006

Transparency and the UNGASS HIV/AIDS high-level review meeting

Last year, in his progress report on the implementation of the UNGASS Declaration of Commitment on HIV/AIDS, the UN Secretary General said:

"Civil society is playing an increasingly valuable role in monitoring the fulfilment of these commitments."

UNAIDS requested governments to submit progress reports on DoC implementation by the end of last year - and despite repeated requests, government reports have not yet been made publicly available by UNAIDS. Contrary to Kofi Annan's hopes, denying access to the basic information and assessments of national government 'progess' seriously undermines any meaningful involvement by civil society.

Please consider adding your signature to the statement below, which strongly urges UNAIDS to make this crucial information available and help ensure meaningful participation of civil society in the UNGASS review process.

If you would like to add your name to the list of statement signatories, please send an email NOW to:

As the date of the UN General Assembly’s high-level review of progress on implementation of the 2001 “Declaration of Commitment on HIV/AIDS” (Doc) draws closer (31 May – 2 June, 2006), we wish to raise an urgent issue that demands immediate attention.

UNAIDS requested governments to submit progress reports on DoC implementation by December 31st, 2005 (later extended to January 31st, 2006). At the same time, over 25 civil society organizations presented UNAIDS with independently-researched national “shadow reports”, and have shared these findings with each other, with their governments and with the broader public (see www.ungasshiv.org).

Unfortunately, despite our repeated requests, government reports have not yet been made publicly available by UNAIDS. Without public access to governments’ official assessments of their progress, it is not possible for civil society groups to comment, respond, and offer alternative assessments and perspectives at the high-level review. We are certain you will agree that civil society groups have different and equally valuable perspectives to governments – perspectives which will add immeasurably to the discussion and debate at the high-level review.The DoC urges the involvement of civil society as an equal partner at all levels of policy-making, implementation and monitoring and evaluation (DoC: p32-33; 94-103). To fulfill this critical aspect of the DoC, it is clear that transparent policy-making processes and access to critical information are essential. In the interest of preserving the credibility and legitimacy of the high-level review meeting, please let us know when and how UNAIDS plans to make available both the government progress reports it has received and its “global progress report.” We would also request a full accounting of which governments have reported on DoC implementation as requested, and which have not. We trust that these requests can be met well in advance of the high-level meeting.

With thanks for your continued support for strong civil society participation in the UNGASS HIV/AIDS high-level review.

Postscript

By the time this letter was sent to UNAIDS on April 3 2006, it was signed by all of the people listed below. Three days later, on 7 April 2006, UNAIDS capitulated and published all national UNGASS reports on their website. They are now available here.

Tuesday, March 21, 2006

The chasm between HIV and TB

The two worst global health problems have combined forces well. But the institutions addressing them have not

A quiet shift took place a few years ago in the impact of global infectious diseases: The human immunodeficiency virus (HIV) epidemic surpassed that of age-old tuberculosis (TB).

In the past five years annual spending on HIV programmes increased 16-fold – from USD 500 million to around USD 8 billion per year. The same period saw a paltry 70% increase in funding for anti-TB efforts.

The cost to humanity? HIV kills around three million people every year. TB kills two million.

The point, however, is not to tally up marks for a macabre competition; it is precisely the opposite: We need to stop thinking of the two diseases in separate bodies, because a third of the 40 million people living with HIV today are also co-infected with TB.In 2006 and for at least the next decade, HIV’s biggest challenge is TB.

One in every three people harbours the TB bacteria in their body. That’s two billion people. TB stays inactive, but transforms into active TB disease in about nine million of us every year. Crucially, people with HIV are about 30 times more likely to develop active TB than those without HIV – fuelling a resurgence of TB in sub-Saharan Africa and some states of the former Soviet Union. East and South Asian countries are next in line.

Imagine the two diseases in one body. Jolting enough to be told you have TB – then to be called back to hear your HIV test was also positive. The doctor is fully aware that TB progresses faster in HIV-infected people, and that TB in those who also have HIV is more likely to be fatal. Their task now is to explain to you that the two diseases often cannot be treated at the same time; the two sets of drugs can interfere with one another.

Sadly, the ease with which the two diseases intensify one another is not mirrored by the groups of people and institutions working to fight them. Despite years of knowing how TB and HIV interact with one another, and how programmes to address them should also work together, this is how they continue to think about HIV and TB: Separately.

It is astounding to find that the heads of three of the main actors responsible for controlling the two diseases – the World Health Organization (WHO), the Joint United Nations Programme on HIV/AIDS (UNAIDS), and the international Stop-TB Partnership – do little more than nominally reflect each other’s experience and advice. All the more surprising when you consider that the offices of the three men are no more than a kilometre apart in Geneva. Each programme continues to eye the others from across the car park and in the process, lose vital lessons in political strategy, resource mobilisation and clearing of service delivery bottlenecks.

The solution is absurdly simple: Break down the walls of established thought between the two diseases and you hold out the biggest promise for saving million of lives.

There is much that the relatively new HIV world has to learn from the old guard. TB has been around for centuries and is one of the areas of public health where we know the most. It is a curable disease with available medicines, and a long demonstrated track record of success. The doctors, the detection and treatment centres, the drugs – much is already in place.

Since it was set up in 2001, for example, the TB Global Drug Facility – aimed at increasing access to high quality TB drugs – has delivered over 4.5 million TB patient treatments. Something that the WHO-supported ‘3 by 5’ anti-HIV drug initiative has been trying to emulate, as yet incompletely.

TB is not only curable, it is preventable. The failure to effectively deliver TB diagnosis, treatment and prevention to people with HIV means that many are dying needlessly.

The most frequently used method for detecting active and infectious TB is a microscopic analysis of a patient’s sputum. The trouble is that the test is antiquated and unreliable in people with HIV. The test result may be negative even though a person has active TB, making reliable TB diagnosis impossible. Commonly-used TB drug treatments are also outdated, with patients often required to take large numbers of tablets every day for up to eight months.

These technical obstacles are far from new; they have been written about and discussed for years now. Less often highlighted are some of the divisions between TB and HIV/AIDS established thinking that prevent synergy.

The TB world can learn from some of the accepted tactics of the movement against HIV. These include obvious lessons on how to raise more money as well as a loyalty to community- and rights-based approaches.

For example, the mainstay of the WHO gold standard policy and treatment package for TB control – known as Directly Observed Treatment, Shortcourse (or DOTS) – is a standard drug treatment for all confirmed cases. This originally meant health workers literally watched patients take their drugs (hence ‘directly-observed’) to ensure the drugs were, in fact, ingested.

“That, for me, is unacceptable because it limits the autonomy and dignity of every person,” commented Zackie Achmat, one of the founders of the South African Treatment Action Campaign, at a recent TB conference.

The HIV/AIDS sector sees clinical care as necessary but not sufficient for the best results. People have to make changes in their lifestyles, develop new skills, and must learn to interact with health care providers to successfully manage their conditions. Similarly, people with TB can no longer can be viewed, nor see themselves, as passive recipients of health care services. These issues are dealt with in a newly published TB ‘Patient’s Charter’, which aims to empower people with TB and their communities by highlighting their rights and responsibilities, and need to be put into practice widely and immediately.

Connecting with the expertise of community groups has been embraced to extreme degrees by responses to TB and HIV. TB services rarely integrate community resources into the care of patients to the same degree as HIV/AIDS services, leaving a broad array of consumer groups, patient advocates, and nongovernmental organisations (NGOs) virtually untapped.

On the other hand, HIV/AIDS NGOs fill many service gaps to greatly enhance the care of people living with HIV and help to meet goals for service coverage and treatment outcomes. A new global plan to address TB head-on over the next decade was recently launched by the Stop TB Partnership. Actions for Life – Towards a World Free of Tuberculosis proposes some bold shifts towards empowerment of TB patients and communities, and asks governments and foundations to foot the bill. They should, despite the ten-year, USD 56 billion price tag.

Some demonstrated behaviour change will probably be required to convince donors. If they can learn to speak the same language, leaders of local and international organisations, NGOs and community-based support groups are perfectly positioned to raise awareness about the two conditions simultaneously. Community leaders are positioned to sensitise the public about TB and HIV, and reduce the stigma associated with them.

Foremost though, is the need for greater cooperation and coherence at the level of international institutions and agencies that help governments to set policies, priorities and good practices in dealing with HIV and TB.

In 2000, at the launch of the Stop-TB Partnership, Peter Piot, still the head of UNAIDS today, may have foreseen today’s organisational stalemate quite clearly: “We are not in competition. We are as intimately allied as are the human immunodeficiency virus and the TB bacillus,” he explained. “We must work together. If we are serious about our missions to stop TB and stop HIV, finding new realistic pathways to the future is imperative.”

Six years on, we have waited too long to see their coherent joint actions on TB and HIV. The first step is simple: Someone get Drs Piot, Raviglione and Espinal to match their schedules and talk.

This is an op-ed that I wrote to mark World TB Day, which falls on Friday 24th March, 2006. I wrote it in my capacity as advisor to theAIDSCareWatch(ACW) campaign. With 350 partners in Asia and Africa, ACW advocates for a comprehensive care package for people living with HIV/AIDS.So far picked up by:The News International, Pakistan (23 March 2006)The Monitor, Uganda (24 March 2006)The National, Papua New Guinea (24 March 2006)The Independent, Bangladesh (27 March 2006)The Kashmir Times, India (27 March 2006)

The role of ICASO

An interesting discussion has emerged on the HealthGap and ITPC lists over the past day or two. It concerns the role of ICASO in ‘managing’ the nomination of civil society participants in various global HIV/AIDS policy arenas and processes. I think it touches on some deeper issues that go way beyond ICASO.

This was all happening in the space of a few hours on different lists – it was beginning to feel like an episode of 24! – with Richard Stern (see left) playing the Keifer Sutherland role.

Richard asked a fairly innocuous question about one of the UNGASS-related working groups, to which Mary Ann Torres (ICASO) replied:

Dear Richard:

Communication about the Civil Society Coalition on UNGASS HIV/AIDS has been posted in all listserves since the end of January. Explanation about the aims of the Coalition, as well as the structure has been amply disseminated. Working Group 2 is one of three working groups created to implement the strategies of the Coalition. It currently has +100 members (from all regions).

Thanks for your interest

Mary Ann

Then Richard came back with:

Thanks Mary Ann

I am not sure that it is a good idea that ICASO is "managing" the nomination of so many important positions on a world wide level, with the result being that these are the people who have access to decision makers in various forums and meetings. ICASO is very big, isn't it? I hope that this type of discussion is not offensive to you...its just a reality that ICASO seems to have become a kind of "mega-AIDS Corporation."

At the moment I don't have any suggestions for an alternative plan, but I think diversity in decision making is very important, and that alternatives should also be sought.

On the one hand this could be positive in some ways, on the other hand, is it really good for civil society world-wide to have so many events, nominations, etc. "managed" by ICASO? Please feel free to let me know your thoughts.

sincerely,

Richard

To which a fairly defensive Tim Thomas (ICASO consultant) responded:

First, a disclaimer: I have been working with ICASO for over 5 years as a part-time independent consultant.

I've never met Richard Stern, but I've marveled at his audacity over the years. More often than not, his activism is well placed because it's well informed. Unfortunately, his (and others) ongoing criticism of ICASO is based on hearsay and speculation - not the facts. Given that ICASO has forged new ground as one of the world's most prolific and strategic advocates on behalf of the community sector, it's strange that forceful and frequent critics like Stern choose to remain so uninformed about ICASO'sstructure.

ICASO is not a 'mega-AIDS corporation.' A simple review of their annualreport shows the breadth and scope of their work, including their financial state. At last count, their Toronto office consists of fewer than 10 full-time employees, and their Regional Secretariats (APCASO, AfriCASO,LACCASO, NACASO, and EEPO) are struggling to accomplish an ambitious work-plan with one or two full-time employees in each office. These people come from the communities they serve, just like most of the activists and advocates on this list.

The reason that ICASO facilitates nominations and appointments of communitysector representatives to so many forums, committees and boards is simple: no one else is doing it. Time and time again, ICASO sends emails as broadly as possible requesting nominations and suggestions for others to do what it does, and time and time again no one replies. There are ample opportunitiesto get involved in ICASO's advocacy and networking - Stern needs only to commit his time and energy and then he , too, will be well placed to influence policy and those who make it. Complaining that ICASO is running the show is a waste of time. If you want to change how community-based advocacy is organized, then stop whining and get involved.

Tim Thomas

And Richard came back to him with….

Hey Tim,

If ICASO has only ten full time employees then how can you possibly do a good job in terms of handling all the responsibility for the nominations for these very important posts, when this is combined with all the other tasks that you undertake??? This is a critical question. Some times its good to say "no, we just can't handle that,lets see if someone else can do it better than us." All of ICASO's public work in this area is "high profile," in the sense of contact with "decision makers" or facilitating who gets contact on the various Boards, working groups etc. I have my doubts about whether you can do an adequate job at effectively and democratically serving the world wide community of PLWA and those who support them with only ten staff members given all the other responsibilities that ICASO apparently has. Sorry but that's how I see it.

By the way, I also set limits for how much I can do effectively. We in Agua Buena focus on treatment access issues in several countries but we often say no to invitations, and we don't take on responsibilities that we can't handle effectively. That, however, does not take away my right to have an opinion and share it, in fact more opinions would be better. I am not sure why you are so defensive.

The core of advocacy is criticism and large Agencies that are so involved in issues related "access to decision makers" should be willing to accept criticism, and at least consider reevaluating their policies...

Tim, I am not criticizing all of what ICASO does, I have seen many, many good things that ICASO does, and I have great respect for the work of LACCASO, your counterpart in Latin America, which has been a leading advocate on so many issues for many years.

But that doesn't mean that I agree with everything that ICASO does, and my position on the issue we have been discussing here has been clear for two years. In my opinion, there is a significant and un-met need for a greater "balance of power" when it comes to determining the representatives of the various constituents of PLWA on the Global Fund Board, working groups, invitations to meetings, etc. etc. etc. As well as the management of the application process where ICASO does not make the final decisions about who is chosen.

My 'audacity' in terms of hopefully constructive criticism (not only of ICASO, but of the Global Fund, the UN Agencies, and many, many other keyactors) that you refer to has certainly closed some doors to me in terms of opportunities and invitations for higher level participation, but I will stick with my approach--- given the number of lives that are at stake. Tim, At this moment we have 4,000 deaths a day from AIDS and probably going up, so you can surely agree that improvement is needed somewhere, right?

If this kind of holocaust were happening in Europe and the U.S., there would be demonstrations in the street every day, until things changed, and I would probably be a moderate compared to what others would be doing and saying.

sincerely,Richard

I have to say I totally share your [Richard] concerns about the need for a broader and more inclusive mechanism for civil society nominations to global and other bodies, and for a more effective system and division of labour to be set up. I doubt there is anyone who could possibly doubt the importance and benefit if it were established. Where I differ is on whether the problem lies with ICASO. Sure they are small, and sure they have limited capacity (I was in their Toronto offices in February and met I think 6-7 people, so fewer than 10 full-time staff really is just that), but I think our collective inability or reluctance to address this and to demand more of this kind of process is the real shame. So well said and thank you for getting this thread going.

Besides the size of any potential facilitator, there are at least two other key issues that need to be raised here.....

Co-option for one. Without intending to point fingers, we have to acknowledge the good and the bad of ICASO's very close relationship with some of the bodies we seek to collectively influence through advocacy. This HAS to put them in a difficult position from time to time - i.e., when civil society 'interests' and those of the global bodies like UNAIDS or the Global Fund get blurred, and things end up being less transparent than we might naively hope. Let's look at an example of what I mean and you can make up your own minds what is driving this kind of process.

When the Universal Access Global Steering Committee (GSC) was set up last November, an email was sent out by UNAIDS giving THREE WORKING DAYS for civil society nominations to be made. It transpired that at the time UNAIDS also 'invited' ICASO to fill some kind of 'facilitating' role in support of civil society engagement with the UA Initiative. As it turned out, the pressing need for convening the committee so quickly (its first meeting) evaporated, and we could actually have taken about two months if needed.

Apparently (according to UNAIDS) about 20 people were nominated during those three days as potential civil society representatives to that body. We were told (again by UNAIDS) that the current reps were selected from those 20. We also now know that a representative of one of the ICASO regional secretariats is one of the current 10 reps, and one person from ICASO's Toronto office has observer status at the GSC meetings that relates somehow to ICASO's/his facilitating role.

We made an explicit appeal (to UNAIDS) for information in three areas:

1. Who was on the list of 20 nominees for the Universal Access panel;

2. Something about how UNAIDS went from those 20 nominees to the selected people. ("Even if you 'hand-picked' them from the list, tell us that");

3. What information can/should be more widely shared about the Global Steering Committee reps (i.e., what can we expect them to share?).

We never received this information. To my knowledge the role of ICASO has never been explained and the information above has never been revealed (by UNAIDS or ICASO).

While all this was going on, I also wrote a mail on behalf of the UNGASS Civil Society Steering Committee that clearly stated:

"While we appreciate the nomination process UNAIDS is trying to follow, we have some serious reservations ... both in principle, but also in light of the very limited time available for a more open consultation and nomination process to be organised."

A general response came back from UNAIDS that included:

"Clearly the selection 'process' could be much improved and the civil society partnerships unit is looking to standardise a protocol for any future similar processes we take forward at UNAIDS - with closer involvement of the PCB NGOs, for example, as a possible way in helping determine outcomes. We have already had useful conversations with ICASO and other organizations about developing a protocol and will ask widely for inputs into this piece of work in early 2006."

So what was going on here? For certain we know that there was an inadequate civil society nomination process, and that it was controlled heavily by one of the very UN agencies that needs to be MORE accountable, not less; that transparency about how nominees were put forward (by who?) and finally selected was non-existent; we also know that ICASO was closely involved in the process behind the scenes, including to some extent 'advising' UNAIDS on how it should be conducted in the future - nevertheless there was zero transparency.

This was a terrible process and a collective failure to nominate participants effectively. It was probably no better that similar processes intended to help engage civil society in the Three Ones and Global Task Team processes, also 'facilitated' by ICASO if I recall correctly.

My personal interpretation is that a small group of people, some from UNAIDS, some from ICASO, and probably a small number of others, got together to do their best to make the process work under great pressure - how else does anything ever get DONE? Despite sincerity and genuine intentions in this instance, by simply going along with the situation of pressure created by UNAIDS, they perpetuated all that is the worst about these fake nomination processes. Of course, the total lack of transparency also leaves room for suspicion and doubts to creep in about motivation, and I for one have questioned whether balancing between maintaining their close relationship with UNAIDS (etc) and authentic transparency on behalf of civil society is even possible for ICASO or anyone else.

So that's the now. The other burning question is what should/could take the place of the mechanisms ICASO currently provides?

I can't help thinking that given investments already made the current systems should provide at least part of the answer. I would encourage ICASO and others to develop further in this direction - much further - possibly to do nothing else? But it has to be done with a much greater commitment to transparency, agreement to let their own HIV/AIDS advocacy agendas go for the sake of neutrality and objectivity, and demonstrate a clear loyalty to the civil society side of the relationships they are trying to help foster. I am not sure if ICASO can or is willing to do those things.

Let's unpack this a little further to see what the 'ideal' facilitator profile would have to look like. I suggest there are at least four essential enabling factors to making such facilitation work effectively:

A unique type of credibility: Gaining a reputation for providing correct, complete and timely information, even when it may reflect badly on oneself or close partners.

Sources of funding and other support that are INDEPENDENT of vested interests and political pressures.

The general backing and support of the communities and organisations that broadly form HIV/AIDS civil society (whatever we each think that means).

And in case they are not difficult enough to find, the fourth is even more difficult to pin down:

An ability to take up a stance of genuine reflection and responsibility - or the ability to put your own ideas aside.

Much of what we see in potential facilitators - including I am afraid ICASO - is typical of the way some NGOs behave: Blaming others for their political intrigue and failure to speak out, and then doing the same themselves.

The question is: If an organisation put forward a coherent plan to do this, and appeared to posess the characteristics above, how many of us would support it?

ICASO does not have that profile at present, but might want it (and could develop it) through its future actions. Who else? I am compelled to mention the 'new' World AIDS Campaign (WAC) and the fact that in some ways WAC and ICASO are trying to do similar things when it comes to facilitation. WAC is new and does not have any other agendas, other than to throw off the old UNAIDS 'baggage' that comes with the name and previous funding support. They are also in their start-up phase and still defining their role clearly - but do appear to have some refreshing approaches in mind.

These two organisations might provide the kind of alternative options/division of labour Richard is seeking. Do they have a plan to do so?

About Me

Tim is the Managing Director of Inís Communication.
Born in London in 1961, he has worked in over 20 countries in Africa, Asia, Europe and South America, and has been living in Chiang Mai in northern Thailand for the past ten years.
Tim has over 20 years experience in editing/writing, health science research, international public health programmes and development communications including positions in the World Health Organization (WHO), UN Joint Programme on HIV/AIDS, Foundation du Présent, Tenovus Institute for Cancer Research, and co-founding the international non-profit Health & Development Networks.